Tuesday, November 25, 2014

Hope For Magnolia

Every now & then an opportunity to help someone presents itself and you just can't look away.  A local family is only weeks away from an unimaginable battle... a baby diagnosed with a serious, life-threatening and rare disease.  This is a family we know, our kids go to school together!  This is a family who has already bravely battled & won the life of one son, but lost another.  And this is why today I invited Cynthia to share her story.  Our only hope is to raise HLH awareness, and maybe have enough prayers & donations sent their way to help little Magnolia when she makes her big debut.  There are links to Cynthia's blog and donation page at the end of the post, but you can also follow along on her facebook page.


In December 2005, my seemingly healthy, beautiful son Isaac was born, little did we know how sick he would turn out to be. At two months of age Isaac was diagnosed with HLH. We spent the next year fighting for his life, Isaac received treatment of chemo and many other drugs for 6 months and had his life saving bone marrow transplant at 8 months old. Isaac, nearly 9 years old is now a very healthy and active  little boy.

We waited a long time before having enough courage to try for another child, we knew that every pregnancy would hold 25% chance of our baby having HLH. We were very afraid but finally we decided to trust in whatever God's plan had for us. In 2011 we became pregnant, at 11 weeks gestation we had testing done to find out if our baby was also affected with the disorder, unfortunately the results were not what we wanted.  Our second son was also sick! Leland was born still at 39 weeks, his disease had triggered in utero, although doctors had planned to treat him after birth they had failed to follow our pregnancy high risk. This should have been done to ensure that our baby was not struggling for they would have been able to intervened sooner.

Our hearts were broken but God must have had a plan and we trusted in that, I love my child and will never forget him. I feel certain that one day I will see him again.
Exactly one year and a week to the day we lost Leland, Elijah, our third son was born, a beautiful healthy boy, he tested negative for HLH and we couldn't be happier. He will be 2 on January 21st.

Now I believe all things happen for a reason, sometimes we don't understand what that reason could possibly be but I trust there is one. Maybe God has a sense of humor but it seems that birth control and nursing wasn't even enough for me not to become pregnant in April of 2014.
Now this came as a complete surprise and while I had mixed emotions, my husband was elated, he was convinced it was a girl, I was convinced otherwise, understandably after having had 3 boys.
I have to say I was more afraid than I had ever been before. I had two beautiful children and I didn't want them to have to go through the hell of life with a sick child, constant hospital visits, waiting in sterile little rooms, being away from their mother, not being able to be close with their new sibling, traveling back and forth, staying in strange places... the stress of it all, it just seemed so unfair. I didn't want to do it, I didn't sleep for 2 weeks, being an emotional person, I wasn't the best person to really make that decision quickly, my husband being the complete opposite and more rational at the time reassured me that no matter what, everything would be okay and we would do what we had to. I agreed and I don't feel shame for not being sure, this is going to change all our lives, its going to be rough and while I have good days when I feel positive, I also often feel like falling apart and running away from it all.

In August we received the results of the tests we had taken for our current pregnancy, I knew the results before the geneticist told me, I knew deep in my heart this child would be sick and I am so sad to say I was right!
What I wasn't prepared for was for her to also tell me that my baby was a girl...that one was a shock(!!)  and for the first time I felt some happiness , I let myself smile and I cried. This was meant to be!, things would turn out fine, I am going to have a daughter and I have  to be strong for her.

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